8. 1 – 8.2 Introduction and aims
Section 8 provides information about clinical trials and research.
- It provides a key grounding for activists interested in HIV research.
- It includes information about how to analyse and interpret trial results and on how research results are presented.
Community involvement in HIV research is important.
HIV activists have always argued for active community representation and involvement at all stages of our health care, including research.
This includes being involved on the type of research and the design of research studies.
This involvement helps make sure that:
- Trials are run properly.
- All patients receive at least current standard-of-care treatment.
- We are able to follow both enrolment and how the trial is run.
- We are able to monitor and follow early results.
- As patients and advocates we have a good idea on how latest treatment advances. may affect the standard of care in the future.
Study participants need to be treated at the current best standard of care throughout the duration of the study. Community involvment makes sure that, if appropriate, the study is changed if the standard of care changes.
Even after a study design is finalised, it often takes more than a year before the first participant is enrolled. It then takes several years for the study to fully enrol and complete.
Research studies therefore need to be designed based on what we expect the standard of care to be for the duration of the study.
Most community advocates need training and support to be actively involved in reseach. Otherwise our involvement is just tokenal – to show good clinical practice, or to get a grant approved.
Full involvment involves having to learn about this work and the responsibilities of being involved in research.
8.2 Aims for this section
After reading section 8, advocates will have an understanding of:
- How trials are designed to produce reliable and accurate information.
- Why research is needed to inform treatment choices.
- The basic concepts used in trials.
- The main types of trials and quality of different types of studies.
- Advantages and disadvantages of different studies.
- Common features of all studies.
- Informed consent and patient care.
- Interpreting study results.
- The different roles advocates can take.
Last updated: 1 December 2015.